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* Don't know if it's worth adding that until the angioplasty or stenting is proved to be safe as an intervention there's no harm and possibly a great deal of benefit in following lifestyle/supplement/dietary approaches that support endothelial health

* Best of luck with your appointment this week

Last edited by bluesky63 on Tue Dec 01, 2009 8:24 pm, edited 1 time in total.

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Thank you for taking the time to write the summary. It is concise, easy to read. I was surfing CCSVI stories this past weekend -- and, oh, my gosh ---- there are quite a few stories and blogs that are really full of misleading information. Hope your blog gets a lot of hits --- we need to all "chip in" and help you and Cheer out.

I for one do need to take a step back, take some deep breaths and focus on remaining reasonable and rational. I need to continue to ask questions.

I've actually began re-reading the research that I printed off way back in February when I first stumbled upon the CCSVI thread here. It makes way more sense to me now than it did then. I'm finding that not only do I now have a much greater understanding of the research, but consequently have way more questions than I did initially. I highly recommend the re-read for those who haven't either attempted to read the research initially, or for those like me, who did "read" it in the beginning, but who didn't really get it way back then.

Very nice article, Marc… But, here is my take on it all for what its worth.. Taking any risk is a very personal decision. We're all here looking for support and hope to rid ourselves from this dreadful disease.

The beauty of Zamboni’s theory is that it began years and years ago. Way before he began to put two and two together. It’s really not his theory at all, but adding to what was already documented… He has built on previous research and for all intents and purposes seems to have been at the right place at the right time with the right skill set and advanced technological tools at his disposal, not to mention the collaboration with many other researchers of varied disciplines. So, maybe his primary motivation was to help his wife? If true, what a beautiful, non-ulterior motive thing this is.. He wasn’t trying to develop a drug to cash in. The theory has been proven by transferring into a quantifiable test with a quantifiable treatment… in and of itself; and is no longer a theory when that happened.. His findings cannot be reproduced unless folks undergo treatment.

CCSVI is not a drug and cannot be tested as such… so if research on venous blockage in MS patients is required for validation, then have all MS patients tested.. Simple enough, right? Hell, as many expensive MRI’s that we all have – not that the MRI is indicative of symptoms and/or disease progression, what’s one more test? We’ll only have to have one… I even want to have my children tested down the road and if need be treated to potentially prevent MS from occurring in the first place.

CCSVI research AND treatment MUST be continued and needs to forge ahead with full vengeance. It will not have “deep pockets” to back the research like big pharma does, but it “will” have a strong voice of everybody either stricken with or otherwise associated with anybody that has MS.. Especially one like myself who is sick and tired of pharmaceutical greed and neuros that are “advisors” to big pharma and are paid large sums of $ to support, I mean advise them.. The drugs are simply not working…

Anyway, as I contemplate CCSVI awaiting to be tested and hopefully have the liberation procedure, (the phrase “liberation procedure” by the way, was not coined by Zamboni) I can't help but to look at it from all angles. We all have to keep in mind that the majority of us here are "not" trained medical professionals. Even the trained "experts" can, do and will get things wrong or worse yet, come with a vested interest, so we have to take everything we read with extreme caution. Not to mention most Dr.'s spend years and years in specialized areas, so when one area "bleeds" (no pun intended) into another area, they seem to be stubborn, arrogant, and clueless and/or won’t collaborate and pass the buck to the next specialist. So when you see multiple disciplines’ working together though, as you do with Zamboni and team, it sure is a blessing.

Some of the concerns and questions you bring up are justified and I just wanted to add a few more as I'm just as curious:

- Why do they see a higher instance of MS in females than males?
- The further away from the equator one lives or is raised the higher the instance of MS?
- Zamboni found a few MS patients without stenosis - did they really have MS?
- Why doesn’t myelin eating immune cells go after the whole brain and spinal cord?
- Is vitamin D deficiency a hereditary issue?
- Is vitamin D deficiency linked only to the mother of MS patients and not necessarily the patient?
- If the mother of an MS'er is vitamin D deficient, why doesn't all her children have MS?
- You have MS and are not vitamin D deficient, but one of your siblings is... why don't they have MS too?
- Why do they see a larger percentage of MS in Scotland?
- Is CCSVI something you are born with?
- If you are born with CCSVI is it caused by or linked in some way to a vitamin D defincey of the mother at the time of pregnancy?
- I have MS, but why doesn't anybody in my family have it.. (Parents, Grandparents, Brothers and Sisters, Uncles and Aunts, and cousins even?)
- Do twins that develop MS “always” both get it?
- Why do "some” male premature babies have lungs that are not fully developed and in female premature babies their lungs are just fine? Can this explain venous malformation in some but not others and the higher instance of female to male MS?
- Does venous stenosis make one more susceptible to viruses?
- Why do we take drugs for MS that are only 30 percent effective?
- Why do some MS’ers progress while on CRABS and others who choose not to take anything don’t progress?
- Why do we take drugs for MS that may potentially kill us (Tysabri and PML)?

I guess I could go on all day... but my point is that we can conjecture all day, every day and still not have any answers. I don’t think any of these questions can prove or refute much of anything, let alone CCSVI.

I feel that, regardless of all questions... If one is found to have an actual physical vein defect, and they have a procedure to repair it, why not fix it??? Our fine Dr.’s operate everyday all over the world with serious problems, risks and lives on the line and none of us bat even an eye. Parts of us are removed from our bodies all the time that we can live without. People die from complications when having their stomachs stapled; fat sucked out of their asses, breast enlargements, and plastic surgery with folk’s lining up for the procedure(s) all day, everyday without question. All I’m asking for is some blocked veins opened up…

Quite frankly, I think anybody who has blocked veins would be foolish not too have this procedure done whether it be stents or ballooning.. risk and all. Considering the QoL with a DX of MS… crapping and pissing your pants, stumbling around like a drunkard, can’t remember your coworkers names after working with them for over 7 years, oh, and the pain, can’t keep your eyes open past 3 o’clock, (add your own symptoms HERE) etc, etc, etc…

In war, some are on the front lines fighting for everybody else while others are hiding till the coast is clear. I’ll be more than happy to be on the front line fighting as long as I’m still breathing.

My only advice would be to dump any pharma stock you may own that has any ties to MS drugs… my cynical mind fears big pharma, that they will still want us all on meds for the rest of our lives, as will the neuro’s – so finding a “true” cure, is absolutely out of the question for them – well, except if the cure requires us to take drug X forever while they laugh all the way to the bank!

CCSVI treatment is here whether you believe in it or not… and I can feel the ground rumbling beneath my numb feet like a freight train… it may have been slow to start, but it’s rolling now, gaining momentum, and it is going to be next to impossible to stop. There will be plenty of room on the train as is on the sidelines for the naysayer critics…

May I say that I believe that if your MS is not progressing in such a way that you are losing the battle, you should really step back.

And I do not mean you are afraid of MS progression, we all are afraid of it, I mean you are really losing the battle and you are getting to the point that assistive devices are needed and nothing else is available or helping.

It takes some real bravery and honesty to take a hard look at your situation and admit that on the whole you are really OK on a day to day basis when you know that you have MS, but many MSers give in to the terror and are blind to today and the fact they can still walk and whatever. They catastrophize every little tingle and twinge--I was like that BIG TIME. I thought every ticklish foot was a relapse. 6 YEARS went by before I realized I was doing fine. I missed a lot wandering around in a high state of terror

This type of person will jump at this surgery eyes closed and should not do so...they are not making the best judgment.

I envy you who can wait so very, very much, the optimal surgery is some years away.

That having been said, my stents are in and I had complications including nerve damage BUT MY SPASMS ARE GONE. I am a lot better I'd say simply for that.

It is a worthwhile trade to me. I am grateful that people with no options or useless options with dangerous side effect (ie novantrone or tysabri for the person who has no inflammation) have something to try at this point and such a person's risk vs reward analysis it totally different than a person who is essentially still very functional.

All that having been said we ALL need to press for treatment to go forward for everyone early enough they can preserve the most possible function.

I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...http://www.thisisms.com/ftopic-7318-0.html This is my regimen threadhttp://www.ccsvibook.com Read my book published by McFarland Health topics

jr5646-thanks for your thoughtful and well presented response to my blog post.

I actually agree with just about everything you say, except that I do think that it's incorrect to equate the balloon angioplasty procedure with the stenting procedure.

The stenting procedure being done at Stanford is a much riskier proposition than Zamboni's "liberation procedure". Stents have very rarely been used in veins, and their use in their jugulars is revolutionary. As our member radeck can attest, if one of these stents becomes dislodged, the results can be catastrophic.

Research in CCSVI definitely MUST continue. Imaging studies alone should be able to ascertain whether there is indeed a correlation between stenosis and MS. IMHO, the surgical procedures being used to correct such stenosis needs to be refined before being put into general use. As it stands now,the stenting procedure is experimental surgery, and anybody choosing to undergo it needs to be acutely aware of that fact, and of the inherent risks involved.

My visible disability is not so bad - but I am so sick of the cognitive effects, and I do not want them to progress another whit if I can help it. My memory, ability to plan, think ahead - my executive function - ihas been degrading for years it seems ... I may not be on the verge of needing a device to walk, but damn it I am sick of this shit taking my mind.

IMHO, the surgical procedures being used to correct such stenosis needs to be refined before being put into general use. As it stands now,the stenting procedure is experimental surgery, and anybody choosing to undergo it needs to be acutely aware of that fact, and of the inherent risks involved.

With each procedure at Stanford, the docs are learning and refining the protocol. The first few of us realized there were potential risks -- did we know exactly what they would be -- the answer is probably no. Hopefully, anyone who is reading your blog Mark, or reading the posts on TIMS knows to be aware of inherent risks. Do they know definitely what risks -- well, they know more than I did. That being said, I do not regret in any way that I moved forward. Yes, I had some recovery problems -- those are now gone. I am enjoying some of the small, subtle improvements to my quality of life.

zap wrote:My visible disability is not so bad - but I am so sick of the cognitive effects, and I do not want them to progress another whit if I can help it. My memory, ability to plan, think ahead - my executive function - ihas been degrading for years it seems ... I may not be on the verge of needing a device to walk, but damn it I am sick of this shit taking my mind.

your comment just hit me--and made me think of the asinine statement people would say to me when I got diagnosed: "Most people with MS live normal, active lives." Ok, just because you don't see the shit under the surface doesn't mean the person is "normal" <end rant>

Anyway, great post Marc, it's hits all the right points. I take issue with the 100% contention though-- as Zap mentioned in an earlier post, there are few enough people in the CCSVI studies to make a 100% finding easily understandable. There are enough people walking around with a "slam dunk" MS diagnosis that one could make sure to get those only in a clinical trial. They would obviously exclude any case where there was the slightest shred of doubt as to the dx. The larger Buffalo trial should shed more light on the 100% figure.

dx RRMS Jun. 2009...on Copaxone and LDN and waiting for my turn to be "liberated"<br />

Zap, I hear you. Losing my mind is a much scarier proposition than being in a wheelchair. My job is my brain, too, so if I can't think I can't research, write and teach. Anyhow I know you will be at Stanford next week as will I. Good luck with everything! I'm still on the fence about surgery but obviously will have a better idea of what I will choose to do after I speak with Dr. Dake.

zap wrote:My visible disability is not so bad - but I am so sick of the cognitive effects, and I do not want them to progress another whit if I can help it. My memory, ability to plan, think ahead - my executive function - ihas been degrading for years it seems ... I may not be on the verge of needing a device to walk, but damn it I am sick of this shit taking my mind.

zap wrote:My visible disability is not so bad - but I am so sick of the cognitive effects, and I do not want them to progress another whit if I can help it. My memory, ability to plan, think ahead - my executive function - ihas been degrading for years it seems ... I may not be on the verge of needing a device to walk, but damn it I am sick of this shit taking my mind.

your comment just hit me--and made me think of the asinine statement people would say to me when I got diagnosed: "Most people with MS live normal, active lives." Ok, just because you don't see the shit under the surface doesn't mean the person is "normal" <end rant>

Anyway, great post Marc, it's hits all the right points. I take issue with the 100% contention though-- as Zap mentioned in an earlier post, there are few enough people in the CCSVI studies to make a 100% finding easily understandable. There are enough people walking around with a "slam dunk" MS diagnosis that one could make sure to get those only in a clinical trial. They would obviously exclude any case where there was the slightest shred of doubt as to the dx. The larger Buffalo trial should shed more light on the 100% figure.

Actually, statistically speaking, there are enough subjects in the Zamboni studies to make a 100% contention questionable. The figure thrown about regarding MS misdiagnosis is 5% to 10%, and that's using the McDonald criteria. That would be enough to throw off Zamboni's numbers.

mrhodes40 wrote:May I say that I believe that if your MS is not progressing in such a way that you are losing the battle, you should really step back.

Are you NOT recommending this treatment now? Or only for the feeble who have no other treatment options? What about the potential for the newly dx? I'm not quite sure what "step back" means.. can you please elaborate?? Is this because of the recent stent migration incident? How far out are you from your stent treatment? If you are not seeing improvements quickly enough maybe you are just overly anxious? Hopefully when you see the Zamboni, two year data published it'll be positive and you'll calm down?

It takes some real bravery and honesty to take a hard look at your situation and admit that on the whole you are really OK on a day to day basis when you know that you have MS, but many MSers give in to the terror and are blind to today and the fact they can still walk and whatever. They catastrophize every little tingle and twinge--I was like that BIG TIME. I thought every ticklish foot was a relapse. 6 YEARS went by before I realized I was doing fine. I missed a lot wandering around in a high state of terror

I thought that's why they gave me all the antidepressants and pain pills??? lol After 8 long years of this bullshit, you begin to just ignore the creepy crawlies, little twiches and such... Quality of life is an extremely difficult thing asses, and so subjective... could be totally different for people.. some folks need an asprin to take a nap and others can have a root canal without novicane... go figure. pain is also very subjective as well... the mind can be a terrible thing

This type of person will jump at this surgery eyes closed and should not do so...they are not making the best judgment.

I envy you who can wait so very, very much, the optimal surgery is some years away.

What exactly is this "optimal surgery" you refer to?

Some folks will blindly follow Dr.s orders and take everything they say as gospel too... I probably fall into the category of "pain in the ass, read it on the internet, questioning everything patient". I'm getting the feeling you're trying to warn people without actually saying too much... if so, then why? mixed messages?

On the other hand, blind faith can really come in handy at times...psych'ing themselves out with unknown fears or inaccurate perceptions, and getting into quite a frenzy over what amounts to very little is a bad thing... I'm not singling out women here, but my wife tends to overeact to things quite often, and I have to calm her down.

That having been said, my stents are in and I had complications including nerve damage BUT MY SPASMS ARE GONE. I am a lot better I'd say simply for that.

It is a worthwhile trade to me. I am grateful that people with no options or useless options with dangerous side effect (ie novantrone or tysabri for the person who has no inflammation) have something to try at this point and such a person's risk vs reward analysis it totally different than a person who is essentially still very functional.

All that having been said we ALL need to press for treatment to go forward for everyone early enough they can preserve the most possible function.

Wondering if the old "time is brain" saying applies and ccsvi treatment should occur quickly for those newly dx'd?? If it could minimize progression, nasty symptoms would be a Godsend.

Funny, looking back when I was first DX, and I started rebif (horrible too, btw) and I felt great prior to taking the stuff.. after a month or so I felt like crap all the time... My neuro at the time said I'd eventually get use to it...

Anyway, I'm glad you are getting some relief... and hope you see continued improvement, Marie. Hang in there....

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